Sometimes life does go right



The memory of the "before" is as visceral as an instinct. Your baby face floats up from the soup of all the yesterdays I've saved for a rainy day. Chubby cheeks, unquenchable smile, stubborn as a mule. Your spiky blond hair that became paintbrush ends when I put it up in pigtails. From the moment you were born, I had you pegged:

Indomitable.

We named you Amelia, which means "hard working", Irene, "peace". Our last name is an old low German phrase that means "unusual amount of hair". Which is hilarious. Thousands of years later, Thuls are still sprouting copious amounts of crazy hair. And you, my third daughter - you were the girl who was peaceful, hard-working, and crowned with the craziest hair of all my kids.


People who meet you now don't understand why you're still sucking on a pacifier. They stare when you morph from intelligent, well-behaved 7 year old to the moans of a pre-verbal infant when we're out in public. And I think this is cool - the stares, the confusion on the faces.

It means you are so normal, my sweet girl, that most people can't tell anything was ever wrong.


I watch the "before" and I cry. Everything was so....normal. So expected. Lock-step with everyone's plan. Evolving plan, yes - but planned. You were a natural extension of your two sisters, and I thought we were doing fine. I thought we were doing right. I thought it would be like this forever.

I am one who marries plans. I don't date them, I cling to them as if they are my very lifeblood. And when they change? It tears a piece of my heart out, most times.


And then there was after. There was the day you woke up and you could talk a little. You couldn't walk, you couldn't sing, you couldn't play, but you could talk. The infection that had ravaged your brain unchecked while doctors struggled to put a name to it, it stole the Amelia we knew and loved and gave us a new and very sick little girl to care for.

Vaccine-related encephalitis. Even at one of the premier hospitals in the United States, it took months for them to correctly diagnose your problem. 

And now it is 4 years later, almost to the day. World Encephalitis Day was just announced for next year: February 22nd, 2014.

You are a survivor. You are a champion in this story. So many days they said would never happen? They've come! The day you walked again. The day your partial seizures stopped and you began to grow. The day you learned your letters once again. And, at 7, just like every other little kid in the country, you learned to READ.

I love you now more than ever. I am thankful we have had these 4 years. I can't imagine my life without you.

For all the wrongs, you are one right in the universe.


Click to learn more about encephalitis